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I Was Diagnosed With Endometriosis & This Is How I Separated My Identity From My Illness

Jenneh Rishe, B.S.N., R.N.
Registered nurse, advocate, & founder
By Jenneh Rishe, B.S.N., R.N.
Registered nurse, advocate, & founder
Jenneh Rishe is a registered nurse, chronic illness advocate, and founder of the Endometriosis Coalition.
Jenneh Rishe invisible illness
Image by Jenneh Rishe

While some health issues are visible to the outside world, many people face chronic conditions that don't have externally visible signs or symptoms—also known as invisible illnesses. In mindbodygreen's new series, we're giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.

Before I got sick, I had my whole life planned out. At the age of 27, I was a nurse manager at the Outpatient Cancer Center at UCLA Medical Center and only three classes away from finishing my master's degree in nursing education at Drexel University with honors. Then, practically overnight, that entire plan dissolved right before my very eyes. I was forced to take a medical leave from my job for an entire year. It felt as if everything I had worked so hard for was being stolen from me, and I had no say in the matter. Plain and simple, I was lost.

How endometriosis affected my life.

It was a Tuesday evening, and I was contemplating whether my symptoms were "bad enough" to go to the emergency room. When it became clear that the pain wasn't something I wanted to ride out at home, I threw in the towel and drove myself to the local hospital at 5:30 p.m. After hours of tests and observation, I was released at three in the morning. And what did I do next? I set my alarm for 5:30 a.m. so I could go to work because I had a presentation to give. I was so afraid of letting my team down that I completely put myself on the back burner.

This is an extreme example of not saying yes to myself, but I have many smaller examples that added up over time: agreeing to plans and events that I knew I had no strength for, working too much and too late, taking on other people's problems when I could hardly handle my own. I always felt guilty when I even considered saying no to anything.

I worried about what others would think if I chose to take care of myself first—so I never did. As you can imagine, living this way led to a deep resentment within me. I felt like I was never able to catch a break. I was always looking for a moment to come up for air, but those moments never came. How could they? I didn't give them the space to surface.

Living with chronic illness.

There was a time when my illnesses were very much my entire life. I was completely wrapped up in them. They consumed most of my waking thoughts—and rightfully so. My illnesses are a huge part of my life. They affect things like the amount of planning and coordinating that goes into seemingly simple tasks like choosing what to eat for breakfast, whether or not I should drive today, or how to come by sleep more easily tonight. The reality of being sick means not having the luxury of putting my illnesses in the back of my closet, to be brought out at a more convenient time.

I also acknowledge that at one time my illnesses occupied an unhealthy portion of my identity. I found myself describing who I was as someone with—endometriosis, SIBO, heart disease—more than anything else. And though these truly were parts of my identity, I was leaving out huge parts of who I was. Spending so much time in the wilderness of chronic illness, I had forgotten who I actually was before my diagnoses.

Coming to terms with my condition.

Processing my loss of self was similar to experiencing grief:

I went through denial, anger, bargaining, depression, and finally, acceptance. Acceptance, for me, meant releasing the idea that I would ever be exactly who I was before my illnesses. This might sound like a sad and somber thing. But over time, it wasn't. Acceptance meant recognizing that my illnesses will always be a part of me, but they are not all of me. 

I didn't magically arrive at this place of acceptance. No. Not even close. This process slowly took shape as I chipped away gradually at years of hurt, disappointment, and what I thought of as betrayal by my own body. 

I don’t think I will ever get to a place where I can say I’m thankful for my illnesses, but I will say I’m thankful for who I’ve become because of them.

Once I finally found myself at this place of acceptance, I realized that even though I couldn't control the circumstances of my life, I could control my outlook. I could control my attitude. I could control how I chose to see my worth and identity. And I chose not to define myself only by my diagnoses, because I'm much, much more than that. I am a nurse ... a wife ... a daughter ... an author ... a sister ... an entrepreneur ... an aunt ... a good friend ... a believer ... and the list goes on.

How I'm managing now.

Now, for the first time in my life, I can say I truly know who I am. I'm aware of the parts of me that still need to heal, and I give space to the parts of me that still need room to grow. I don't push myself beyond my limits to make others happy. I celebrate every win, big or small. I forgive myself for the days I'm unrealistically hard on myself. I surrender to the reality that there will be hard days ahead, and I do my best not to let my setbacks take away from the very real progress I've made.

I still have days when I feel the immense weight of living with chronic illness—I would be lying if I said I did not. The difference is, I'm finally in a place where I refuse to let those days make me question my worth or doubt my purpose. I won't let the difficult moments define my existence.

I don't think I will ever get to a place where I can say I'm thankful for my illnesses, but I will say I'm thankful for who I've become because of them. In a way, they've shaped my favorite things about myself and my life: my empathy for others ... my ability to look for the good in impossibly hard situations ... the deep relationships I've formed ... my relentless determination ... my hope to live a full life despite difficult circumstances ... my gift for connecting with people ... my journey of self-exploration ... and my desire to see people for exactly who they are.

Could I have arrived at a place of being my true self without going through such heartache and pain to get here? Possibly. But I cannot deny that everything I have lived through has played a significant role in who I am today—someone I am proud to have gotten to know. Someone who is more than her illnesses.

Adapted excerpt from Part of You, Not All of You: Shared Wisdom and Guided Journaling for Life With Chronic Illness by Jenneh Rishe. Reprinted with permission from Mascot Books. Copyright © 2022. 

Jenneh Rishe, B.S.N., R.N. author page.
Jenneh Rishe, B.S.N., R.N.
Registered nurse, advocate, & founder

Jenneh Rishe is a registered nurse, chronic illness advocate, and founder of the Endometriosis Coalition. Her advocacy work has been featured in Cosmopolitan, Women’s Health, Healthline, Vice and The Today Show as part of Maria Shriver’s “Women’s Wellness Health DisruptHERS” segment. Although Jenneh herself has been diagnosed with multiple chronic illnesses and has recently survived open heart surgery, she is dedicated to helping assist in the wellness of those suffering from chronic illness through education, encouragement, and advocacy.